Thursday, 11 February 2010

Terrence Higgins Trust - yet another failure

Today I tried to get some help for what I am going through. Call me selfish but I honestly thought there would be some help out there .........somewhere.....................but sadly there is none.

Well none I can access locally without traveling literally hundreds of miles to get that support .
and right now I am just not up to doing that travelling

So again I tried local agencies - they said HIV was not in their remit they suggested KPS as the only charity for people with HIV in Cornwall


Of course I have gone to them and try all the time
to get their help and support
I am even a volunteer for them but as yet they have not found me a constructive role as a volunteer - not have I been able to find one with KPS for myself
Yet I so want to be useful to them!!

But sadly KPS, Kernow Positive Support does not understand my situation -
BUT  I will not knock them or anywhere and certainly not here as they do a great job in supporting many people with HIV in Cornwall and sadly there are many but not one that is public or willing to be which on one level I do very much I understand.

So I will not knock KPS but I have not found they can offer me personally anything.
As a fundamental difference we have - between KPS ad myself - is i belve in peer support
And also I feel any agency or support or charity helping people with HIV those they employee with HIV have to be public.

In fact I would go further personally prefer it if they only employed those with HIV.

A stance that it seems that not even THT understands?

But Pozfem UK: http://www.poz-fem-uk.org/ the wonderful organization that has offered me the only REAL support I have ever had since being diagnosed HIV, is run and organized by women that are HIV positive only and they are all open about being HIV.

Not always, to everyone in their own lives as to be open in every aspect of your life s difficult for most, but they certainly are to those of us that are living with HIV. They offer peer support. sadly to get their peer support and be part of their group I have to travel outside of Cornwall often to cities hundreds of miles form where I live and right now I jsut do not feel up to it

But PozFem are also activists
They put their money where their mouth is and campaign publicly and openly to improve the lot of women living with HIV and to change policy etc

But if all other agencies do not agree with me that those with HIV working in the HIV area need to be openly HIV and more to the point the agency needs to be publicly campaigning for change and that is their right.

BUT while I accept that it is anyone's choice not to disclose their HIV status if you are a private individual .

It is just not acceptable for me on a personal level that any person with HIV taking money from a job with a HIV support charity is not open in every level of their lives they can possibly be about being HIV themselves. Well at least on those levels that affect theri role as a aid worker for an HIV charity or organisation


If they are not what message does it give the rest of us who live with HIV
That it is fine to be ashamed and to hide it ?? That to live in secrecy and fear is the RIGHT way forward


I know I am in the minority, and perhaps wrong? to feel as I do in Cornwall - as so many have told me this - but that is how I feel
But that does not alter how I feel and I need allies to go public about being HIV in Cornwall

Therefore KPS and all other agencies who do not offer OUT peer support are not able to support me in this for many reasons - that I do on one level understand why they wish to encourage secrecy


- but it is of no use to me than a wet jelly as an individual OUT with HIV in Cornwall

So yet again in desperation I called THT - as THT is the nearest other HIV charity to me i.e Bristol - yet again as since I have been diagnosed I have called them about 4 times and never got anything from them but impatience

This time exactly the same ......................the man I talked to got impatient after what he said was 20 minutes!!!!!!!!!!!!!!!!!!! but I know it was much less. He kept saying how can we move forward from here ??

Move forward - no I was not asking us to 'move forward' I was not asking him  for solutions

I was just asking for some peer support as we can not 'move forward' unless you have a cure for HIV how can you move forward? I am just trying to find a way to live with this and get some peer and empathic support to do so  ???


I thought if I called THT of all HIV organizations I would be talking to others who were also OUT about being HIV!!

NO WAY it seems not !!
NOT EVEN THT STAFF ARE OUT ABOUT BEING HIV


As I said to him...I said OK but do you have HIV? Am I talking to someone who understands the full implications of living with HIV? Is this peer support you are offering ?

He basically said - that’s none of your business!! -Oh crap !!

I am talking to yet another one who does not disclose their status either HIV+ or minus? Yet this is someone who is working for a HIV charity

Sorry but I just DO NOT GET IT!!!!
 
I said by phoning you I have disclosed to you that I am HIV and I personally want to know if the person I am talking to has it too or not? I am perfectly harpy to talk to someone from THT or any charity who does not and happy to talk to you if you say you do but that I am not to disclose it and I will not ( anyway when you ring the THT help line you do not get the persons name so you have no idea who you are talking to anyway
.................................but actually I do think it in the context of my ow personal difficulties with living with HIV is relevant for me to know?

And for me whether the person I am talking to has HIV to or not changes the whole perspective of our conversation.


As what I want and so need is PEER support - not some kind of charity with no empathy
 
On your bike THT - Terrence Higgins Trust

You might provide some information services but in terms of what I need i.e peer and empathetic support you offer none!!

If those who answer the phones can not even tell those they talk to that they are HIV + or HIV when the person you are talking to introduced themselves with 'I have HIV

Then THT as far as being able to offer me anything - you skink

I am so angry…………… Today and on every other day I have tried your support  - and yet again you provided me with absolutely ZILCH

Also how can we move forward if what you are suggesting is practical solutions and people to contact locally to me ..........when there is no one ?? There is NO ONE in Cornwall who is ever going to be of help to me  re living with HIV

As I have so far tried them all.
As you can see, I started writing on this blog as someone half way sensible and with a brain ......
Nearly 2 years later into my diagnosis of having HIV - I have finally lost it !!!!!!!!!!!!!!!!=
I always sad you have to reach rock bottom to find a way up - hopefully I will now find a way forward 

As the first step is accepting there is no help, support or rather just plain empathy for my situation, for me out there, not for me or my husband actually  if we could be of any use and find  a useful role we in HIV awareness etc we perhaps could cope with that


But no one wants even/especially this from us!

2 comments:

Winegirl said...

Vee,

I do not know what to say that sounds logival and calm, because like you I cannot understand why these people are not willing to offer proper peer support! We have been having a debate in our trust about mental health peer support this week and the trust has employed around 30 people to work soley as service users and ex service users to offer peer support within the service.
AT LAST! i say...

But anyway, the point is I totally agree with what you are saying, and I am so sorry that this is affecting you (understandably) in the way it is.

My Love

Helen (WG)

mike said...

love to see this discussion! It’s great to see you all working through the issues and also, it’s great to see recommendations for testing. In the end, it’s what your actual users do and prefer hat should be your biggest driver in making these decisions.


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